instill FOR urethral pain

[icbop]

Hi,

I noticed a lot of posts on how the rescue instills hurt the urethra. My NP said I should try instills for urethral pain (my only IC symptom). I declined bc I was certain they would make things worse.

Dr. Moldwin's book mentioned a special device (like a small catheter) they were using for patients like me.

Has anyone tried this? Also, has anyone who has big-time urethral pain been helped by rescue instills?

Thanks!

[Roxie2007]

HI! I had to write just to mention that for urethra pain I use MSM gel. Have you tried that?? You might give it a try before you try the instill if you are worried that it will make things worse. I had Severe urethra pain when I started using the MSM gel. I used it 3 times a day for 2 months and now I only use it every cpl days cause I'm totally pain free. Roxie

[icbop]

Hi,

Thanks for the post. Funny you should mention this. I just got some in the mail yesterday but have not yet tried it. I thought I'd give it a go. The Quackwatch site, however, says there is no evidence it works. I still ordered it since it's inexpensive and others on these boards have reported success.

Again, thanks.

HI! I had to write just to mention that for urethra pain I use MSM gel. Have you tried that?? You might give it a try before you try the instill if you are worried that it will make things worse. I had Severe urethra pain when I started using the MSM gel. I used it 3 times a day for 2 months and now I only use it every cpl days cause I'm totally pain free. Roxie

[rachann]

Been there done it

I just recently got instills at the uro's office and did 1 instill at home. My urethra became very swollen and I ended up worse. This is just my own experience so please don't base your decision on my story alone. I will probably never try instills again. Best of Luck, rachann

[jen74]

I am not sure how the instill will help your urethra. I mean unless you just put the meds in the catheter and let them out in the urethra area to kind of coat that area, that may help. I guess the only way to find out is to try and see. Hope it helps give you some relief.
Jen

[bchard99]

MSM gek

Hey gals: Went to my uro and he wants me to start elmiron and do instills --but he is in Philadelphia and I am 4 hrs away so I am looking for a local uro.
Anyway I am scared to death to try anything in my vagina or urethra/bladder.
My gyn prescribed vagifem because I have vaginal atrophy (post menopause) and I am afraid to try even that. Any body using vagifem and have IC?Also - any experiences with elmiron? I don't want to make things worse as my worst symptom is the burning.

Has anyone expereienced your urine getting hot right before a flare?Also, I drink baking soda dissolved in a 1 cup amt. of water --and drink that down every 30 minutes until I get relieft--but it doesn;'t last long. I am taking darvocette for pain but uro or pcp don't want to prescribe anymore for pain--uro wants me to also go to pain clinic. Any experiences with that?Also does anyone have side effects from elmiron like hair falling out, etcl
Please write back --I feel so alone .
I have had IC for years, but I had breast cancer last year and went off all hormones --and now my IC is out of control

Hugs to all of you
Bobbi

[Roxie2007]

HI! I have vaginal atrophy too. I use the Climara patch....instead of the creams. For urethra pain I use MSM gel. I take Elmiron and Elavil. I don't have any side effects from either my pain went wayyyyy down after starting Elavil. Maybe you should try that before the instills. Some people love instills...but my Uro/ic specialist hasn't ever recommended those for me. Why don't you find an IC specialist/Uro? If you are looking for a new dr. anyway?? I think that would be your next step. You aren't alone.......write me....PM me.....when ever! Roxie

[L. Thomas]

I do home instill. I don't have urethra pain so I don't have a clue if it would help. I am sure of one thing though. There a so many different recipes that I would hesitate to say what it might do.

I use an 8fr pediatric feeding tube as a catheter. It is very small when you compare it to a 16-18fr that is a size that many MD’s and hospitals use. There are feeding tubes smaller than 8fr.

It might be that he thinks if you use a small catheter that there will be less pressure and that the urethra might adjust to the size of the catheter. Who knows? It could be anything.

You will read that there are a lot of negative experiences. But I am living proof that they work great for some. Instills are an option, not a solution or cure. For me instills relieve my symptoms and have since the beginning

[LO45013]

msm gel

Where do you order the msm gel?

[Roxie2007]

LO45013,
I get the MSM gel from www.jacoblab.com They make the original MSM and DMSO. Roxie

[cia]

I have started getting instills once a month for my horrible PMS flare. My Urethra kills from the catheter so I am weighing whether this is a good idea or not. I will know better when I get my period and see how bad my IC was just prior. I have started to put heat between my legs instead of just on my pelvis, that helps a lot with the urethral pain. I will have to check out the MSM cream. I can't imagine how an instill would help your urethra unless maybe they think you will feel better if they stretch it a little with each instill. I had mine stretched with my hydro and I felt soooo much better. Good luck finding a Uro close by, 4 hours is an awful long ride.

[rachann]

bchard99

I feel your pain. My pain got so severe at work on Friday that I had to go to the ER. My pain doc increased my Lortab to 2 every 6 hrs as needed. That was not even helping. The hopital gave me percacet which was somewhat better. They found more white blood cells in my urine along with blood and Luks. I am now on my 3rd antibiotic Cipro. I am taking probiotics and eating yogurt praying I don't get sick from all of these antibiotics. I'm sitting on a heating pad right now in pain. I might not be able to work tomorrow and I pray I don't lose my job. You are not alone in your suffering. If you feel like you are not getting adequate pain management, go to a pain specialist. I am seriously considering having my bladder removed. I pray we both soon have pain free days. Rachann

[Debgail]

bchard99

Yep I am on vagifem too. I have not noticed any bad effects on my bladder. In the past I was on premarin pills and they killed my bladder. I also used the premarin cream vaginally at the same time and had major vaginal swelling with it. Hopefully, you will have sucess with the vagifem too. My uro is having me use the vagifem to "toughen up" my urethra. I have severe urethral pain during cathing(use an 8 french) so we will see if it helps. I would give it a try! Good luck!

[jen74]

I noticed alot of you do instills, so do I. How do you do them and not get a UTI though? I do the instills once a week and I am VERY clean, I mean cleaner that the doctors are even , and will still come down with infections. I also am having issues with antibitoics, as I am becoming allergic to most of them and they all are the ones that treat UTI's, so I have no clue as to what I am going to do. I just cannot keep getting these infections though. The instills are all the helps me with the pain some. I cannot tolerate any other meds that are used to treat the IC.
What do you guys do to prevent UTI's when doing the cathing. I hate doing the catheter thing because anytime you do that it is a risk no matter how clean you are.
Jen

[bunnykinb]

My number one complaint about IC is my urethral pain. Sometimes it is the urethra other times it is the sides. I have been gettin DMSO instills since July 2006. I do have MSM gel but I guess I should be using it 3x a day instead of just 2. Maybe consistency is the key. I seem to have burning every day.

I have been on nortriptyline since 4/26/07 until now. I am wondering if I should go back to Elavil which seemed to help subside the burning after 2 weeks, but I became outrageously hungry all the time. That is why I asked to be switched to nortriptyline.

I also went to another gyno last week to see if I have VV. Everything looks wonderful in those regions but slides to the lab were sent anyways. I go back next week. Can you believe the day I go in to see her, I have no pain at all? UGH.